ANA Discussion Forum
AN Community => AN Community => Topic started by: windinthesails on October 06, 2006, 11:26:59 pm
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I am just curious, my AN (4cm on the right side) was diagnosed right before my 23rd birthday and it made me wonder how many ppl are diagnosed before they are 30? Also what stuff did you do to cope and get on with life?
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i was diagnosed with a 4.8 cm tumor on the right side when i was 17. I had surgery 3 days later. I couldn't research at all because the surgeon didn't know if it was cancerous or benign until he got in there and sent some of it to the lab. Boy i was in quite a surprise when i woke up. So how are you doing? Does your face move?
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I was diagnosed just after my 23rd birthday (had been trying to get "diagnosed" for about 4 years before that, that is to say had symptoms).
How did I "cope" with it?
There was no time to "cope" pre-op, I was in the OR within something like two weeks.
Post-op I just stumpled through it all.
I fell into depression and PTSD and didn't get treatment until about two years later for that.
It was only my own "internal, natural" coping mechanisms that got me through it all I guess.....I was raised that you just "carry on" and that's what I did.
I returned to work, full time, around 3 1/2 months and thanks to my co-workers I did OK (they helped me out more than I realised I'm sure), I just ignored the vertigo and just kept turning my head to help myself hear.
I went for the hypoglossal transfer surgery about April and was off work for 6 weeks then just "carried on" and returned to work.
I had a very hard time with the way my face looked and tended to isolate myself somewhat but my friends got me "out there" and I returned to all my normal activities.
My self esteem took a great blow and so did my decision making skills in my personal life, I blame my first marriage on that (married someone who was a creep). It was like I wasn't seeing things clearly in my "personal life" for a number of years......the fog eventually cleared up though.
I didn't have any connection to anyone who had gone through this, I did go to a ANAC meeting once but it was just a business type meeting and I didn't "get anything" out of it other than seeing the faces of others "the same as mine", I did start to get the newletter and read it all the time (over and over) and found it comforting that others suffer the same as I.
When I look back I wonder too how I coped, my friends and co-workers tell me how well I coped. The first two or three years post-op seem like a bad dream now so to speak, some days it feels like it happened to someone else not me and other days it feels like it was just yesterday.
Kathleen
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I was diagnosed at 40 but...about two months after my surgery one of my son's friends was diagnosed, had her surgery, and I just saw her picture in the paper bending down to wash a car with the swim team from school. My son said she struggled the first few months back at school but this year seems to be back to normal.
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they found mine at 40 .. but now that I understand the effects... I should of found it my 20's .. I think it was small then .. my hearing was ok, but I did start having tinnitus (on my AN side) and stange twitches on my face, (on my AN side) lasting only a sec or two once in a blue moon .. I started having trouble with my contact lens .. getting red eye etc...(on my AN side!!) I stopped wearing in my 30's ...
the last couple years, the AN I'm sure had a growth spurt for some reason, and I started having trouble, (mainly my hearing and balance) the MRI showed it to be 3.9 cm's .. and Dr. Hits after the surgery said it was larger than 4+cm ....
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Mine was finally diagnosed at age 45. I had been searching for an answer to my symptoms for around 10 years. At 7 years pre diagnosed, the ENT just wrote it off to tinnitus and didn't order an MRI. At 4 years pre diagnosed after an MRI it was misdiagnosed as a blood clot, and after an angiogram and they didn't find a clot, It was dismissed. I went 4 more years until I got to the right Doc's. They told me it had probably been there 20+ years.
patti UT
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Hi,
My daughter was diagnosed in June at 17 years old. Turned out to be 6cm. After three months in the hospital and home now for 3 weeks she seems to be is coping well. They put her on a low does of Prozac while she was in the hospital but took her off if it the other day. The psychiatrist felt that she was doing well and that if she started having any signs of depression to come see him again. I thiink it's too early to tell how she will eventually feel and cope with all this. She still has to go through 6 weeks of radiation (30 treatments) and when that is over and she starts to return to her normal life I'm sure she'll have to learn all about coping skills that one doesn't know even exists until they are faced with such a challange in their life.
Michelle
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Hi Everyone,
I know I have been really lucky in many respects, my face shows barely any recognition that I even had a problem (and unless you knew what to look for you wouldnt know it) and i loss the hearing on my right side but my other ear works perfect, I was lucky enough to get to take the year off from school at not loose my spot in physical therapy program and I have great family and friends. It is also good to know that I am not as alone as everyone makes it seem like when you are first diagnosed. So hearing from each one of you has been helpful and I want to thank you for responding.
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Hi,
I was diagnosed at 44 yrs old but they said I have had it for 20+ years. Now I look back and remember the fatigue and slow loss of hearing but I brushed those symptoms off at the time, I even made a joke of them.
Regards
Chris
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Hi,
I had surgery right after my 25th birthday for 6x3x3 cm AN which was discovered accidentally since I had no headaches, tinnutis or any loss of hearing. All my nerves were spared, but the surgery left me with the right-sided weakness (If I don't exercise, I still get a frozen shoulder), severe tinnutis (resolved over the years thanks to Gingko Biloba),SSD (fully adjusted), intractable headaches (took 10 years to resolve) with nausea and vomiting, mild nystagmus, constant scar pains (I had retrosig). I also had aseptic meningitis and normal pressure hydrocephalus which necessitated a shunt. After 3.5 months I went to work but found it difficult to get through the day and had little energy to do anything afterwards. Unfortunately, I got pregnant a year after surgery, and that was awful. My headache lasted 5 months. I was so tired that I went to bed at 7 PM! There was no medicine I could take for fear of harming a baby; acupuncturists did not want to touch me because of a potential lawsuit if I miscarried. The doctors thought the tumor was back and at 17 months pregnant I had MRI (negative). After I delivered, I lost all the pregnancy weight in 3 weeks and then some. The post-partum depression hit me like a rock. It was absolutely the worst I ever felt in my life and I cannot even compare it to any post-surgery blues. Prozac worked really fast and also got rid of all the flashbacks to my surgery period and nightmares about it. My headaches did not really improve, but somehow I was able to focus on the positive and grin and bear all the pain and discomfort. It took 5 more years to bring them down to manageable levels and for 3 more to dissapear completely. In short, it took me 10 years to heal, only to find out that the tumor is back. I have been watching it for 8 years and plan to have another surgery sometime next summer. I have to say, these past 8 years have been pain and discomfort free. I am now 43 and hope my next surgery will be a lot easier to deal with.
It is never the right time to get sick or get AN bit I do feel as though I have lost 10 most energetic years of my life to it. At that time I did not know anybody my age going through any illness, let alone brain surgery. In 40's people start accumulating medical conditions. Some of my neighbors (approx. my age) had breast cancer, thyroid cancer,etc. Soon I will be telling them my story, so I don't feel so singled out anymore. Back in 1988, I could only dream of a place where I could get so much relevant information and support all at once! Thanks everybody for the willingness to share!
Eve
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I was diagnosed at 26 and had surgery just before my 27th birthday. It's tough to forget about it and go on like nothing happened. I still feel that I don't have the energy I had before surgery and I still have some buzzing in my AN ear, but other than that I feel great. I do everything I did before surgery and then some. I always told my wife that I was looking forward to the days that I would forget about everything. However, I can honestly say that I think I've had only one or two days where I haven't thought about it. I'm sure with time it will only get better.
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Yes, I was diagnosed this April with a 5+ cm tumor...Just before my 23rd birthday. Tell me more about things. Like when and if they did surgery already? What were you told? What kind of complications do you have?
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sorry meant to say my 22nd b-day
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I was diagnosed at age 28, had surgery a week after my 29th birthday. Just had the two year anniversary of my first surgery on Saturday 10/7
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I had the opportunity to talk to a young man who was diagnosed and surgically treated when he was 15 with a large (5+ cm) AN. He was back in school and doing great.
Regards,
Rob
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I was diagnosed the next day after my 30th birthday. After the surgery the surgeon said that I had had it probably 12 to 14 years , during which time I had three full term pregnancies and one miscarriage (hormones?) . When I asked how large the tumor was, doc. made a loose fist and said,"about that big" (tennis ball?). He indicated at one point that I couldn't wait for Christmas break (school teacher) and this was jast after Thanksgiving. Also, during that time I started and finished BS Ed. and started on a MA (English). I really don't know how I did it with all the cognitive problems I have (didn''t know my problems had a name until recently). After surgery I switched to MS Ed. and finished. Then I had to quit teaching because I had lost my strong voice, plus all the other problems.
When I attended the Symposium in Little Rock, there was a 21- year-old in attendance who had had surgery on both sides and was totally deaf. She couldn't smile, but her face was symmetrical. Also, there was discussion of a four-year-old girl who had recently been diagnosed and treated.
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i was diagnosed a few months after turning 30....
8 mm.
I think doctirs are becoming more aware of the symptoms and the possibility of ANs so we are
finding out sooner. I have seen a lot of post from people who has symptoms for ten years or more before being diagnosed, doctors are more aware, at least i think thats a part of the reason we see a fair amount of people under 30
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I think you make a good point that doctors are becoming more aware of ANs and could do a lot with the age thing
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Doctor's knowledge that such a tumor can occur under 30 is definately a reason they're being found, I remember more than one doctor saying to me when I was first diagnosed that a brain tumor is someone "so young was rare"....I bet they weren't finding them because they weren't looking for them! Also the MRI is helping in finding these in "young people" who usually have very small one's not seen on CAT scans hense since the MRI's introduction and more common use as a diagnostic tool the stat.'s of AN's found in those under 30 are going up.
Kathleen
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I was diagnosed 8/30/07 with a 2.7 cm which was measured by my doctor last week and was actually a 3.1 cm AN, the radiology report was wrong. I have tinnitus and normal hearing. My AN was actually found on accident. I am deciding this week between radiation and surgery. I am scared that not many patients with a 3 cm and above have been treated with radiation.
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Hi,
I was diagnoesd in October I was 30 in january, if I'd of gone to see my doctor when my symptoms first started almost 2 years ago I would of been under 30, but like most people I didn't want to bother the doctor with what I thought were trvial things (if only I knew) I have been told the tumor is around 3cm, golf ball size and from the scan pictures it is pushed up against my brain on the left side.
Apparantly its been there for years unnoticed, scary really, but as mentioned the extensive use of MRI's is making these somewhat rare tumours more common.
I'm glad to find there are more people on here around my age group I was begining to think I was the only one.
I'm having my surgery on friday 9th Nov 07 wish me luck.
Cheryl XxX
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I have sym in my 20's .. but never thought about them... its only when they got to be 40 ..that they got to be to bad to ingnore.
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24..diagnosed summer of '07 after 2 plus of years of ringing and eventually noticed hearing loss. 2.4 cm right side surgery probably in February or march by Mcmenamy and delashaw at oshu.
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I was diagnosed age 29 w/1.4cm right side. I have been off balance for years. Now I know why. Didnt have hearing or tinitus (spelling?) till April of this year. Went to the drs many times between April till end of Aug trying to figure out what the problem was. They wouldnt do MRI because I was pregnant. After giving birth I went back to drs and went for MRI. My fears were confirmed. Going in and having CK done in January.
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:'(I was 54yrs when they discovered mine and I believe I had it for years before but didnt recognize the symptoms. I would think that if you have to have one of these damn things it would be better when your younger I believe younger people recuperate faster. Us oldies take longer and we usually have other issues with it. so anyway Good Luck, and Merry Christmas You will be alright Have a good docter ask alot of questions and a good support system. my prayers are for and with you. :'(
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I was diagnosed with a 7+ AN a week before my 23rd birthday and had surgery two months later. Took a very long time to recover and now that I'm 5 months post-op I'm just starting to turn the corner.